In the summer of 2024, we noticed a large bump on Charlotte’s head. What we (and her doctors) assumed was a cyst ended up being something much more. After appointments, tests, and a referral to a neurosurgeon, due to the proximity of the mass to her soft spot, Charlotte had surgery in November 2024. The night before Thanksgiving, we received confusing pathology results that didn’t mention a cyst at all, but a clump of histiocytes growing where they shouldn’t have been.

The months that followed were filled with visits to Novant Health and St. Jude’s clinic for MRIs, ultrasounds, bloodwork, and x-rays. In January 2025, we finally received a diagnosis: juvenile xanthogranuloma (JXG). We always knew our Charlie was special and didn’t need a rare disorder to prove it.

We are incredibly grateful that her diagnosis is benign, knowing that so many histiocytic disorders are not. Our brave girl has faced every appointment, every scan, and even a second surgery in August 2025 with incredible strength. Her doctors thought her JXG was getting more aggressive and felt removal was the best way forward. The plastic surgeon was unable to get clean margins during that second surgery and, because the genetic mutation is one histiocytosis specialists have never seen, we continue to monitor her closely with follow-ups for further regrowth.

Throughout all of this, the Histiocytosis Association has been a source of information, guidance, and hope. Having a place to turn to for trusted resources made the world of difference during some of the scarier moments.

No family should have to navigate a rare diagnosis alone, which is why we invite you to become one of “Charlie’s Angels.” Your support helps fund research, education, and resources for families like ours who are searching for answers and better treatments.

Thank you for loving our sweet girl and donating to a worthy cause. We couldn’t do this without you!